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Consent to research
 

Consent to research

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Project document and wireframe for the Consent to Research project at http://del-fi.org/consent

Project document and wireframe for the Consent to Research project at http://del-fi.org/consent

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    Consent to research  Consent to research Presentation Transcript

    • consent to research
      designed by:
      john wilbanks
      sponsored by:
      Sage Bionetworks
      Kauffman Foundation
      Lybba
      pro bono counsel provided by:
      danvorhaus
    • traditional
      study
      institution
      “normal” home of research study
      - university
      - medical center
    • novel
      institutions
      emerging home of research study
      - may invest at university
      - may invest in novel studies (including mobile, company, ???)
      traditional
      study
      institution
      “normal” home of research study
      - university
      - medical center
    • novel
      institutions
      • forming nodes, but not networks
      • unlikely to achieve integration
      traditional
      study
      institution
    • novel
      institutions
      novel
      institutions
      traditional
      study
      institution
      novel
      institutions
      novel
      institutions
      traditional
      study
      institution
      traditional
      study
      institution
      novel
      institutions
      traditional
      study
      institution
      traditional
      study
      institution
      traditional
      study
      institution
      traditional
      study
      institution
    • privacy
      aggregator
      • privacy intermediaries to facilitate private access
      • empower granular access to private information
      • focused on HIPAA sensitive data
      privacy
      marketplace
    • what‘s missing?
      public access to information needed to build models of disease
      the role of research in the system - of individuals who want their data used to generate new knowledge
    • what do we propose to build?
      standards that allow for open and extensible communication across all four classes of entities.
      the creation of “public genomic records” that are individual, but not identified
      consent systems and user interfaces that allow those public genomic records to move from place to place
    • what do we propose to build?
      standards that allow for open and extensible communication across all four classes of entities.
      the creation of “public genomic records” that are individual, but not identified
      consent systems and user interfaces that allow those public genomic records to move from place to place
      Sage Bionetworks
    • what do we propose to build?
      standards that allow for open and extensible communication across all four classes of entities.
      the creation of “public genomic records” that are individual, but not identified.
      consent systems and user interfaces that allow those public genomic records to move from place to place
      Consent to Research
    • “approve once, research many times”
    • sage bionetworks “public genomic records”
      “static” genomic
      data
      full genome sequence
      genome variation (i.e. 23andme)
    • sage bionetworks “public genomic records”
      “dynamic” genomic
      data
      DNA expression
      RNA expression
      methylation
      “the new new machine”
    • sage bionetworks “public genomic records”
      “observational”
      data
      phenotypic
      disease response
      “ambient” data (smartphones etc)
    • sage bionetworks “public genomic records”
      “static” genomic
      data
      “dynamic” genomic
      data
      “observational”
      data
    • sage bionetworks “public genomic records”
      requires “informed consent” to share.
      “static” genomic
      data
      “dynamic” genomic
      data
      “observational”
      data
    • old school consent
    • new school consent
    • new school consent
      (has a real legal tool underneath)
    • coming in 2012.
    • want to learn more?
      follow @wilbanks
      follow @sagebio
      http://del-fi.org/consent
      http://sagebase.org/commons